Young previvor support and resource needs

1. Default Section

FORCE is collaborating with researchers from Georgetown University and conducting a brief (15 minute) anonymous survey in order to better understand the needs of young previvors with a BRCA mutation or family history of cancer. Participation in this survey is limited to high-risk women age 18 - 25 with a BRCA mutation or family history of cancer who have never been diagnosed with cancer.

By continuing, you are volunteering to participate. If you do not wish to participate, please close your browser or exit at any time.

All responses to this survey will be confidential.

1. How often do you go online to access the Internet?

How often do you go online to access the Internet? Never

Rarely

Sometimes

Often (at least once/week)

Very often (more than once/week)

2. When you go online, where do you primarily access the Internet from?

When you go online, where do you primarily access the Internet from? Home

Library

Internet cafe

Friend or family member’s home

Work

Other (please specify)

3. Have you ever....

Yes

No

Been diagnosed with breast cancer?

*Have you ever.... Been diagnosed with breast cancer? Yes

Been diagnosed with breast cancer? No

Been diagnosed with ovarian cancer?

Been diagnosed with ovarian cancer? Yes

Been diagnosed with ovarian cancer? No

Been diagnosed with some other cancer?

Been diagnosed with some other cancer? Yes

Been diagnosed with some other cancer? No

Comment

4. Have you consulted with a genetics expert or received genetic counseling about BRCA testing?

Have you consulted with a genetics expert or received genetic counseling about BRCA testing? Yes

No

5. Have you undergone or are you planning on undergoing genetic testing for a BRCA mutation?

Have you undergone or are you planning on undergoing genetic testing for a BRCA mutation? Yes, I have had genetic testing

I have not had genetic testing and I do not plan to have testing in the future

I have not had genetic testing but I am planning to have it in the next 3-5 years

I have not had genetic testing but I am planning to have it in the next 5-10 years

I plan to have genetic testing in the future but I am uncertain when I will have it

6. What were your test results?

What were your test results? I have not have BRCA testing

I tested positive for a BRCA mutation

I tested negative for the known BRCA mutation in my family (true negative)

I tested negative for a BRCA mutation and there is no known mutation in my family (uninformative negative)

I tested positive for a Variant of Uncertain Significance

I tested positive for some other hereditary syndrome that is not BRCA

I am currently waiting for my BRCA test results

Comments

7. Are you married, involved in a relationship or single?

Are you married, involved in a relationship or single? Married

Divorced

Engaged

Not married but involved in a serious relationship

Single

Comments

8. How many children do you have (please include biological, adoptive, and step-children in this total, as well as any other children you may raising as a full-time parent)?

How many children do you have (please include biological, adoptive, and step-children in this total, as well as any other children you may raising as a full-time parent)?
0 (I do not have any children)

1 child

2 children

3 or more children

Ages of your children (if applicable)

9. Have you ever....

Yes

No, and not considering it within the next 5 years

No, but considering it it within the next 5 years

I'm not sure

Taken a medication to lower your risk for cancer

*Have you ever.... Taken a medication to lower your risk for cancer Yes

Taken a medication to lower your risk for cancer No, and not considering it within the next 5 years

Taken a medication to lower your risk for cancer No, but considering it it within the next 5 years

Taken a medication to lower your risk for cancer I'm not sure

Had a mammogram

Had a mammogram Yes

Had a mammogram No, and not considering it within the next 5 years

Had a mammogram No, but considering it it within the next 5 years

Had a mammogram I'm not sure

Had a breast MRI

Had a breast MRI Yes

Had a breast MRI No, and not considering it within the next 5 years

Had a breast MRI No, but considering it it within the next 5 years

Had a breast MRI I'm not sure

Had surgery to remove your breast(s)?

Had surgery to remove your breast(s)? Yes

Had surgery to remove your breast(s)? No, and not considering it within the next 5 years

Had surgery to remove your breast(s)? No, but considering it it within the next 5 years

Had surgery to remove your breast(s)? I'm not sure

Had surgery to reconstruct your breast(s)?

Had surgery to reconstruct your breast(s)? Yes

Had surgery to reconstruct your breast(s)? No, and not considering it within the next 5 years

Had surgery to reconstruct your breast(s)? No, but considering it it within the next 5 years

Had surgery to reconstruct your breast(s)? I'm not sure

Had surgery to remove your ovaries?

Had surgery to remove your ovaries? Yes

Had surgery to remove your ovaries? No, and not considering it within the next 5 years

Had surgery to remove your ovaries? No, but considering it it within the next 5 years

Had surgery to remove your ovaries? I'm not sure

Comments (please specify)

10. Please think about the need for resources, support, and information for young women with a BRCA mutation or family history of cancer.

Yes

No

I don't know

Is there a need for more resources/support?

*Please think about the need for resources, support, and information for young women with a BRCA mutation or family history of cancer. Is there a need for more resources/support? Yes

Is there a need for more resources/support? No

Is there a need for more resources/support? I don't know

Do you want more resources/support?

Do you want more resources/support? Yes

Do you want more resources/support? No

Do you want more resources/support? I don't know

Would you use more resources/support?

Would you use more resources/support? Yes

Would you use more resources/support? No

Would you use more resources/support? I don't know

11. Regarding resources and support, please indicate if any or all of the following topics would be helpful for young, high-risk women with a BRCA mutation or family history of cancer who have never been diagnosed with cancer.

Yes

No

I don't know

Making decisions regarding genetic counseling

*Regarding resources and support, please indicate if any or all of the following topics would be helpful for young, high-risk women with a BRCA mutation or family history of cancer who have never been diagnosed with cancer. Making decisions regarding genetic counseling Yes

Making decisions regarding genetic counseling No

Making decisions regarding genetic counseling I don't know

Making decisions regarding genetic testing

Making decisions regarding genetic testing Yes

Making decisions regarding genetic testing No

Making decisions regarding genetic testing I don't know

Making decisions regarding risk-management options

Making decisions regarding risk-management options Yes

Making decisions regarding risk-management options No

Making decisions regarding risk-management options I don't know

Issues associated with dating

Issues associated with dating Yes

Issues associated with dating No

Issues associated with dating I don't know

Issues associated with fertility and family planning

Issues associated with fertility and family planning Yes

Issues associated with fertility and family planning No

Issues associated with fertility and family planning I don't know

Communicating with my spouse/partner

Communicating with my spouse/partner Yes

Communicating with my spouse/partner No

Communicating with my spouse/partner I don't know

Communicating with adult relatives

Communicating with adult relatives Yes

Communicating with adult relatives No

Communicating with adult relatives I don't know

Communicating with children

Communicating with children Yes

Communicating with children No

Communicating with children I don't know

Intimacy and sexuality issues

Intimacy and sexuality issues Yes

Intimacy and sexuality issues No

Intimacy and sexuality issues I don't know

Communicating with friends

Communicating with friends Yes

Communicating with friends No

Communicating with friends I don't know

Issues associated with career planning and work-related issues

Issues associated with career planning and work-related issues Yes

Issues associated with career planning and work-related issues No

Issues associated with career planning and work-related issues I don't know

Issues associated with financial planning

Issues associated with financial planning Yes

Issues associated with financial planning No

Issues associated with financial planning I don't know

Other (please specify)

12. On a scale from 1 to 7, where 1 = “Not at all likely” and 7 = “Very likely”, how likely would you be to find the following resources and support information for spouses and partners to be useful to you? (check all that apply)

1 (Not at all likely)

2

3

4

5

6

7 (Very likely)

Informational materials delivered by regular mail

*On a scale from 1 to 7, where 1 = “Not at all likely” and 7 = “Very likely”, how likely would you be to find the following resources and support information for spouses and partners to be useful to you? (check all that apply) Informational materials delivered by regular mail 1 (Not at all likely)

Informational materials delivered by regular mail 2

Informational materials delivered by regular mail 3

Informational materials delivered by regular mail 4

Informational materials delivered by regular mail 5

Informational materials delivered by regular mail 6

Informational materials delivered by regular mail 7 (Very likely)

Toll-free telephone help line staffed by other young women

Toll-free telephone help line staffed by other young women 1 (Not at all likely)

Toll-free telephone help line staffed by other young women 2

Toll-free telephone help line staffed by other young women 3

Toll-free telephone help line staffed by other young women 4

Toll-free telephone help line staffed by other young women 5

Toll-free telephone help line staffed by other young women 6

Toll-free telephone help line staffed by other young women 7 (Very likely)

Informational materials delivered by e-mail

Informational materials delivered by e-mail 1 (Not at all likely)

Informational materials delivered by e-mail 2

Informational materials delivered by e-mail 3

Informational materials delivered by e-mail 4

Informational materials delivered by e-mail 5

Informational materials delivered by e-mail 6

Informational materials delivered by e-mail 7 (Very likely)

Interactive meeting or support group at a local FORCE outreach group meeting

Interactive meeting or support group at a local FORCE outreach group meeting 1 (Not at all likely)

Interactive meeting or support group at a local FORCE outreach group meeting 2

Interactive meeting or support group at a local FORCE outreach group meeting 3

Interactive meeting or support group at a local FORCE outreach group meeting 4

Interactive meeting or support group at a local FORCE outreach group meeting 5

Interactive meeting or support group at a local FORCE outreach group meeting 6

Interactive meeting or support group at a local FORCE outreach group meeting 7 (Very likely)

Interactive meeting or support group at FORCE national annual conference

Interactive meeting or support group at FORCE national annual conference 1 (Not at all likely)

Interactive meeting or support group at FORCE national annual conference 2

Interactive meeting or support group at FORCE national annual conference 3

Interactive meeting or support group at FORCE national annual conference 4

Interactive meeting or support group at FORCE national annual conference 5

Interactive meeting or support group at FORCE national annual conference 6

Interactive meeting or support group at FORCE national annual conference 7 (Very likely)

Printed booklet or guide

Printed booklet or guide 1 (Not at all likely)

Printed booklet or guide 2

Printed booklet or guide 3

Printed booklet or guide 4

Printed booklet or guide 5

Printed booklet or guide 6

Printed booklet or guide 7 (Very likely)

Periodic newsletter

Periodic newsletter 1 (Not at all likely)

Periodic newsletter 2

Periodic newsletter 3

Periodic newsletter 4

Periodic newsletter 5

Periodic newsletter 6

Periodic newsletter 7 (Very likely)

Expert teleconference or webinar

Expert teleconference or webinar 1 (Not at all likely)

Expert teleconference or webinar 2

Expert teleconference or webinar 3

Expert teleconference or webinar 4

Expert teleconference or webinar 5

Expert teleconference or webinar 6

Expert teleconference or webinar 7 (Very likely)

Informational video or DVD

Informational video or DVD 1 (Not at all likely)

Informational video or DVD 2

Informational video or DVD 3

Informational video or DVD 4

Informational video or DVD 5

Informational video or DVD 6

Informational video or DVD 7 (Very likely)

Website with message boards (visitor posts and comments)

Website with message boards (visitor posts and comments) 1 (Not at all likely)

Speaking with other young women going through similar situation (peer support)

Speaking with other young women going through similar situation (peer support) 1 (Not at all likely)

Speaking with other young women going through similar situation (peer support) 2

Speaking with other young women going through similar situation (peer support) 3

Speaking with other young women going through similar situation (peer support) 4

Speaking with other young women going through similar situation (peer support) 5

Speaking with other young women going through similar situation (peer support) 6

Speaking with other young women going through similar situation (peer support) 7 (Very likely)

Speaking with another young woman who has been through this situation plus specialized training (peer counselor)

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 1 (Not at all likely)

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 2

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 3

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 4

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 5

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 6

Speaking with another young woman who has been through this situation plus specialized training (peer counselor) 7 (Very likely)

Other (please specify)

13. Do you wish to speak or meet with other young women who are high risk for cancer?

Do you wish to speak or meet with other young women who are high risk for cancer? Yes

No

Unsure

Comments

14. What is your age as of July 1, 2011?

What is your age as of July 1, 2011?

15. Which of the following would you say is your race? (Choose all that apply)

Which of the following would you say is your race? (Choose all that apply) White

Black or African American

American Indian or Alaska Native

Asian

Native Hawaiian or other Pacific Islander

Other (please specify)

16. Where do you live?

Where do you live? The United States

Outside of the United States

17. If you currently reside in the United States, what is the 5 digit ZIP code of your primary residence?

If you currently reside in the United States, what is the 5 digit ZIP code of your primary residence?

18. What is the highest grade or year of school you completed?

What is the highest grade or year of school you completed?
Never attended school or only attended Kindergarten

Grades 1-8 (Elementary)

Grades 9-11 (Some high school)

Grade 12 or GED (High school graduate)

College 1 year to 3 years (Some college or technical school)

College 4 years or more (College graduate)

19. Is there any other feedback that you would like to share with us?

Is there any other feedback that you would like to share with us?

Optional:
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